Ichthyosis Focus Spring 2017 A Quarterly Journal for Friends of FIRST Volume 36, No. 2 Your Year in Review 2016 Annual Report

Inside This Issue:

Your Year in Review 6

Why I Fundraise for FIRST 11

30th Annual Health Leadership Conference 12

A Full House in Raleigh & San Antonio 13

IAM Worldwide 15 FY 2016 ANNUAL REPORT A Letter from Jean Pickford, CEO You, our members, are at the heart of FIRST and what inspires me to embrace everything I do with compassion and determination. Looking back at this past year, if 2016 showed us anything, it’s that FIRST is, without a doubt, resolute. The world, in so many ways, continues to rapidly change, and FIRST is poised, energized, and determined to continue to offer the most beneficial programs and services, in the most effective way possible….for you.

So what’s new? With the continual challenge of a shifting and broadening terrain of healthcare technology and communications, FIRST must answer the challenge and invite members directly into our conversation to answer a singular question: How can we help to better serve you? In this issue, you’ll discover a sampling of our new integrated approach to our programs like the FIRST-hosted Live WebEx Series with ichthyosis medical experts and product developers; a patient-driven upgrade to our Life Series modules - a library addressing the care and consideration for various stages of living with ichthyosis (new parents, teens, seniors); a new product sampling program and an international Ichthyosis Awareness Month (IAM) collaboration with our partners around the globe, for the very first time.

We pride ourselves in staying forward-thinking to assure that FIRST remains relevant and impactful. If you are interested in joining the conversation, please participate in one of our upcoming calls, events, or social media groups. Perhaps you are compelled to support or plan a fundraiser? There are plenty of ways to join our special family. Reach out and let me know what’s on your mind, what do you need, and how can we help?

All the best,

Jean Pickford A Letter from Jeff A. Hoerle, President, FIRST Board of Directors Dear FIRST Members and Friends, FIRST enjoyed an exciting 2016, highlighted by our National Conference in San Diego, which saw a record 473 attendees connect with each other, with medical professionals, and with FIRST staff. I was privileged to be able to speak with many of you—a father and son from Australia, a long-time member from Texas, a family with two affected daughters from New Jersey—hear your stories, and learn from your experience. We are all partners in our community and we are stronger through our shared engagement. During 2016, FIRST reaffirmed its commitment to engage with members and to reach as many current and new members as possible. We will do this again in 2017 with a record-breaking 13 patient support forums! Connecting provides solace and solutions; we learn best—about tips for daily treatment or advances in science—when we interact with each other.

Whenever possible, I speak with individual members and their families to improve my understanding of how FIRST can make a difference in people’s lives. It is conversations with members—including my affected 10-year-old daughter Sasha—that help me get past the board strategy discussions and monthly update reviews. In one recent conversation, a FIRST member of nearly 20 years emphasized the importance of sharing insights and being able to trust the information that comes from FIRST. We aspire to meet this need through events like the FIRST to Know calls and a revamped website. Our goal is to provide as many opportunities as possible for members to connect and learn from each other. We are all experts in our own ways. www.firstskinfoundation.org 3 FY 2016 ANNUAL REPORT Letter from Jeff A. Hoerle, continued...

This year, we have 11 FIRST to Know calls planned; perhaps you will have an idea for adding number 12! We care about your thoughts and can’t do it without you! Additionally, during 2016, we created a vastly improved mobile version of the FIRST website—no mean feat for a small non-profit organization. We are adding new sections and developing an upgrade to our lifecycle materials. We continually enhance our content and utilize the professional expertise of our esteemed advisors on our Medical and Scientific Advisory Board (MSAB). I thank all FIRST staff and the MSAB for your ongoing dedication and passion for the foundation.

FIRST continues to focus on scientific advances and to work with leading researchers. We are playing a major role in the building of a new ichthyosis registry. Through this, the research community has access to information of which we could have only dreamed five years ago. Genetic understanding will lead to real breakthroughs and FIRST has a front row seat at the table. We also know that you want better treatments today. We have redoubled our efforts to explore new therapies and approaches that can make a difference. We learn from sharing with you, and the “Tools and Tips for Living with Ichthyosis” section on our website continues to grow—please engage with us if you have suggestions!

FIRST’s mission is to educate, inspire, and connect with YOU. The more I see the committed work of our staff, the volunteers, the board of directors, and the MSAB, the more I recognize that real human connection is what matters and drives progress. We are lucky to have so many talented groups of individuals working together in a variety of nurturing and ground-breaking ways. I urge you to please join with us and engage!

My best regards to you,

Jeff A. Hoerle, President, Board of Directors

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4 www.firstskinfoundation.org PAID ADVERTISEMENT FY 2016 ANNUAL REPORT A Letter from Larry Silverman, CFO Dear Fellow Members, Donors, and Friends of FIRST,

Congratulations to all of the staff and volunteers on another great year for FIRST, highlighted by the National Conference in San Diego. The reach and success of our organization continues to make a significant imprint on the ichthyosis community. I want to once again recognize Jean, Moureen, Lisa, Maureen and Madeline, our professional staff, for their continued commitment to excellence and their enthusiastic support to all. Our President, Jeff Hoerle, has worked tirelessly to improve the quality, stability, and support services of the organization. He, along with all my fellow board members are truly dedicated to fostering the very best results for the FIRST family.

Now, to the state of financial affairs. The year has produced a great number of challenges. We saw a significant decrease in contributions over prior years and a reduction in investment income with the challenges of low interest rates. In spite of these financial hurdles, the overall health of FIRST has remained. The staff and board have made changes in order to reduce various expense areas while maintaining a high level of support for member services. We will continue to keep a careful watch on ways to keep our financial health strong as we move into the future. For the period ending September 30, 2016, net assets were down approximately $125,000 primarily caused from a decrease in contributions and investment income. Despite these constraints, we were still able to provide over $180,000 in research funding this last fiscal year. Once again, the lion’s share of contributions are spent on FIRST’s programs and services. Our Investment Committee continues to closely monitor all aspects of our progress and performance with our reserves and asset managers. Overall our financial health is strong and we have made adjustments to balance the budget for this next fiscal year.

Please feel free to reach out at any time should you have any questions or concerns about our financial affairs. I wish all of you a continued year full of great health, peace, and contentment.

Warmest regards, Larry Silverman, CPA, CFP, CFO, Board of Directors

Financials FY 2016 FY16 – October 1, 2015 – September 30, 2016

Revenue $702,017 Expenses $976,664

Investment Income - Management & National Conference - $25,877 or 3% General Operations - Fundraising - $117,358 or $98,636 or 14% $84,819 or 8% 12% or $.12 of every dollar or $.08 of every dollar

Contributions, gifts, grants - Programs, Support and $577,356 or 83% Research - $774,487 or 80% or $.80 of every dollar

www.firstskinfoundation.org 5 FY 2016 ANNUAL REPORT Your Year in Review FEBRUARY 2016 NOVEMBER 2015 DECEMBER 2015 MARCH 2016 OCTOBER 2015 JANUARY 2016

• Release the • FIRST • Another • Celebrating • The Jane and • Drs. Sherri Bale, Butterfly Tour celebrates nine Ichthyosis 35 Years! Henry Bukaty Skin John Compton & Stop #2! years of our Clinic opens An historic Care Fund has Gabriele Richard The second in-house its doors at achievement awarded $19,190 are honored at stop of the Research Massachusetts celebrated by dollars since its FIRST’s 2016 Release the Grant General Hospital the production inception in 2000. Testimonial Butterfly Tour Program, in Boston. of The History Dinner at the • FIRST YouTube brought Tracie awarding of FIRST video, City Club of • Reaching channel reaches & Bailey Pretak medical which debuted Washington in another 300,000 views! to Lancaster, investigators at our National Washington, DC. milestone...over Pennsylvania, grants for their Conference, 80 cases have • A record- the home town work in the San Diego in been evaluated breaking of the Stern field of June of 2016. through FIRST’s 19 affected family. Fox43 ichthyosis or Tele-ichthyosis • Committed students and WGAL- related skin Program. members receive funding Lancaster, types. featured the Denise Eiser from the event on the • Staff and and Mark Evans UFIRST evening news. board join the Board Scholarship members of Directors. Program to collaborate support their • Dr. Christopher together in post-secondary Bunick receives Philadelphia education. a $50,000 to review, Research • FIRST is evaluate, and Grant Award awarded discuss future for his work in $100,000 grant planning at microscopic from the Lennox FIRST Board crystallography Foundation to of Directors of keratins 1 support Retreat. and 10. strategies for member connection and engagement.

6 www.firstskinfoundation.org FY 2016 ANNUAL REPORT MAY 2016 SEPTEMBER 2016 APRIL 2016 JUNE 2016 JULY 2016 AUGUST 2016

• An exclusive • The National • Our signature • The first FIRST • Longtime •¿Habla espanol? TV series on Registry for event, the three- to Know support member Anne Educational TLC, “Two in a Ichthyosis & day National conference call for Kaier’s story, booklets and Million,” features Related Skin Conference for grandparents is Finding Refuge resource sheets Ken Krips and Disorders com- individuals and held! with the Skin I’m are translated into Bobbi Green, bines with the families in San In, is published • Dr. Britt Spanish and a two FIRST former Registry Diego celebrates online by The Craiglow, in new Spanish members living at University of a record-breaking New York Times collaboration with section of the with ichthyosis. Washington and number of and FIRST’s FIRST’s MSAB website is goes live! Over attendees, website visitor and PeDRA, is developed. 700 individuals reaching 473! traffic spikes with awarded funding are registered to 4,425 views in a • The 2nd Annual for a research date and nearly • The 2nd annual single day. Chicago Area project studying 650 have nationwide online Picnic, hosted by newborns and • FIRST promotes received genetic fundraiser, Dr. Amy Paller children with the Sjögren-Lars- diagnoses. RAISE, is and her team at featured at the ichthyosis. son Syndrome Northwestern • Number of National (SLS) study, University, brings members in Conference. which was fol- more than 75 FIRST lowed by Aldeyra • Dr. Amy Paller individuals Facebook Therapeutics together in one Groups breaks and her announcing colleagues region for 1,000! positive results discussions and from Northwestern from a random- University enroll fun (next one is ized, double-blind, Sept 23, 2017). participants in vehicle-controlled a study to clinical trial of top- • FIRST goes understand the ical dermatologic mobile! A cause of skin NS2 in patients redesigned redness in with Sjögren-Lars- website launches, ichthyosis, and son Syndrome. improving Dr. Keith Choate Study is currently access from and the team from ongoing. mobile devices. Yale University host the Gene • Hooray for • 52 fantastic Discovery Clinic the first FIRST members wrap In Memoriam at the National Champions! Marc, up RAISE, the Conference. Denise, Marc and nationwide Our deepest sorrow and heartfelt Both studies are Eric Benedetto fundraiser with condolences recognize the family ongoing. are honored in a grand total of of FIRST member Stephanie New York sur- $33,549 to Turner, who passed away on • The Pretak & rounded by family support FIRST. March 3. Stephanie, who was Kocher families and friends. affected with harlequin ichthyosis, are crowned • An automated lived in Wynne, Arkansas, with her Volunteers of • FIRST member physician finder husband Curtis and two beautiful the Year. database service goes live young children. She and her family reaches 20,000 on the website, have been members of FIRST and Facebook helping connect since 1993. Stephanie was a fans hits 4,000! members to positive spirit, an enthusiastic knowledgeable advocate for ichthyosis dermatologists awareness, and an inspiration to across the all who knew her both in person country. To date, and through our online community. over 500 patients We know how many people she have accessed touched and her joyous nature will the new online forever live in our hearts. service. Rest in peace.

www.firstskinfoundation.org 7 FY 2016 ANNUAL REPORT Donor Listing (This listing includes all donations made during the 2016 calendar year)

Mr. and Mrs. David Cina Mr. and Mrs. Richard Gibson Ms. Wendy Kunzler $100 - $249 Mr. and Mrs. Sean Cina Mrs. Lisa Gillette Mr. and Mrs. Robert Kurtz Dr. and Mrs. Harvey Adams Mrs. Mary Clair Ms. Kathleen Gilmartin-Vesco Ashi Labouisse Rolena Adorno, PhD Mr. and Mrs. David Clapp Ms. Alisa Goldstein Land-V-Scape, Inc. Mr. and Mrs. Gumersindo Aguila, Jr. Ms. Patricia Clavin GoodSearch/GoodShop Ms. Annie Lasalla Mr. and Mrs. Thomas Alba Ms. Kathy Cleveland Dr. and Mrs. John Goodsell Ms. Darenda Lease Ms. Kim Albright Ms. Christine Coates Mr. and Mrs. William Goss Mr. and Mrs. Alan Leblang / LeBlang Family Trust Mr. John Allen Mr. and Mrs. Roland Coates Mr. and Mrs. David Gosselin Mr. and Mrs. Benjamin Lebrun Mr. Robert Amendolara Jamie Cobby Mr. and Mrs. William Grady Ms. Ann Ledezma American Pumping, Inc. Ms. Joan Cobe Dr. Gloria Graham Mr. and Mrs. Richard Lertora Mr. Harold Ames Mr. and Mrs. Jason Cole Mr. and Mrs. Jack Grams Mr. and Mrs. Lance Lesher Ms. Jennifer Ammons Ms. Sandy Cole Ms. Sue Green Mr. Bruce Levine Mr. Jovany Andrade Mr. and Mrs. Geno Como Mr. Carl Greenfeld & Mr. and Mrs. Paul Lewis Anonymous (11) Ms. Laura Cordeira Dr. Rachel Brandt-Greenfeld Mr Arnaud Lhopiteau Mr. Mallesham Anumula Mr. John Cordon Ms. Lisette Grieco Mr. and Mrs. Gregory LiCalzi Ms. Mary Arcidy Corning Free Academy Class of 1956 Ms. Susan Griess Mr. and Mrs. Joseph Linaugh Mr. and Mrs. Gerald Arendt Ms. Emily Cour Ms. Megan Griffith Mrs. Ethel Lindberg Ms. Dolores Arjona CRF Concrete Construction Corp. Mr. and Mrs. Jack Groom Mr. and Mrs. Alan Locascio ASF Construction & Excavation Corp. Ms. Patricia Crockett Ms. Karen Guthrie Mr. Mick Lohrer Mr. and Mrs. Robert Ash Curry Chevrolet Ms. Michela Haber Loiseau Construction, Inc. At Home Realty Bob and Kathy Cypher Mr. Will Hager LuLaRoe, LLC Mr. and Mrs. Douglas Auw Ms. Chantee Dancik Dr. Diane Haggis & Mr. Douglas Haggis Mr. and Mrs. Harold Lustgarten Axis Piping, Inc. Ms. Erica Daniell Mr. and Mrs. Norman Hamel Mr. and Mrs. Fred Lyford Mr. and Mrs. Thomas Bachand Mr. Alex Darrow Mr. Dan Hamilton Mr. and Mrs. Jeffrey Lyngaas Mr. Walter Bagian Ms. Rosemary Davis Ada Hamosh, MD Ms. Janet Macleod Renkui Bai Mr. Eric Daze Mr. and Mrs. Noel Handran Ms. Anne Maddalena Mr Nicholas Baker Ms. Marianne Deiulio Delasco Tyler and Renee Haning Ms. Maria Mahl Ms. Eileen Baltazar Ms. Quinn Deloughary Mr. and Mrs. Robert Hanks Mr. and Mrs. Peter Marchiano Ms. Erin Bamgbala Mr. and Mrs. Richard DeLoughary Mr. and Mrs. Stephen Hariu Mr. Kenneth Markley Mr. and Mrs. Michael Barbaro Ms. Roberta DeLuca & Marla E. Capsambelis Mr. and Mrs. Timothy Harper Marsella Insurance Agency Ms. Jacqueline Barrett Mr. Scott Diack Mr. Eric Haslinger Mr. Bryan Martin Ms. Merritt Bartlett Mr. and Mrs. Joseph Diaz Ms. Cora Hefley Ms. Kathy Martin Ms. Brenda Bartlett Mr. Steve Dickson Mr. and Mrs. Rodney Herris Mr. Thomas Marty Mr. and Mrs. Jesse Bartlett Ms. Martha Ditmeyer Ms. Cheryl Hershey Mr. and Mrs. Harold Mason Mr. and Mrs. Ahmie Baum Mr. Alistair Dobbie Mr. Sean Hickey Mr. and Mrs. Guy Mason Susan Bayliss, MD Mr. and Mrs. James Dolan Mr. and Mrs. Hobart Higuchi Mr. and Mrs. J. David Mast Mr. Howard Beale Mrs. Joyce Dombrowski Mr. William Hoerle Mr. Phil Matthews Ms. Ashley Beglarian Ms. Deborah Donnell & Mr. Andrew G. Bruce Mr. Brian Hogg Mr. and Mrs. Richard Maurer Marc & Eric Benedetto Ms. Rebecca Donohue Mr. and Mrs. Marty Hollingsworth, Jr. Mr. and Mrs. John McCarthy Benfield Electric Supply Company, Inc. Mr. and Mrs. Joseph Donovan Ms. Allison Holzer Mr. and Mrs. Terence McCarthy Mr. and Mrs. Jeffrey Bennett Ms. Judy Doussan Dr. Kristen Hook Mr. Lou McCormick Lionel Bercovitch, MD Mr. Brad Doyle Ms. Carrie Hopkins Ms. Doris McCue & Mr. George V.W. Ball Mr. and Mrs. Neale Bergman Ms. Lorraine Drago Ms. Diane Horn Ms. Caroline McGuigan Dr. and Mrs. Lawrence Bergman Drain Saver Central Sewer, LLC Mr. Christopher Hussey Ms. Nancy McKinney Mrs. Shirley Bernard Drain Saver Sewer Service Impact Concrete and Control Inspection Ms. Ann McKinney Mr. and Mrs. Jeffrey Bessler Mr. and Mrs. Paul Duffy Intel Corporation Mr. James McNabb Mr. and Mrs. Robert Bialer Ms. Julie Dunipace J & J Heating & Fuel Oil, Corp. Mr. Thomas McTernan Mr. Sander Bieber & Ms. Linda E. Rosenzweig Ms. Anne Dunipace Ms. Patricia Jacklitch Mr. James McTernan Mrs. Mardel Bierwagen Mr. Michael Dunleavy Mr. and Mrs. Steve Jackson Ms. Pauline McTernan Ms. Aimee Bigham Mr. and Mrs. Charles Dunn Mr. and Mrs. Jerome Jacobsmeyer Mr. Dale Medearis Mr. and Mrs. Robert Bobos Mr. Mark Dykstra Mr. and Mrs. Deon James MFM Contracting Corp. Ms. Karen Bobos Mr. Don Earley M.D. Jara & M.C. Jara Mr. Tommy Michael BodyWorks USA Mrs. Cynthia Early Ms. Debbie Jenkins Ms. Jill Micsky Mr. and Mrs. Don Boggs Mr. and Mrs. Thomas Egan, Jr. Jenna Concrete Corp. Midtown Arts Center Ms. Christine Booe Mr. Patrick Ehlen Jenna Harlem River, Inc. Mrs. Laila Migally Mr. and Mrs. James Borden Eileen and Richard Eiser Mr. and Mrs. Jeff Jensen Mike’s Transportation, LLC Mr. and Mrs. Jack Borland Mrs. Denise Eiser Jimmy Ryan’s Ms. Courtney Miles Ms. Regina Bower Elmsfords P.B.A. Mr. Tom Johans Mr. and Mrs. James Miller, III Ms. Jamie Bowman Mr. and Mrs. Victor Emanuel Mr. Andrew Joncich Mr. and Mrs. Jim Miller Mr. and Mrs. Glenn Bowman Mr. Marcos Emig Mr. and Mrs. James Joyner Mr. and Mrs. Gary Miller Mr. and Mrs. Barry Brandt Emiliani LLC Mrs. Jeannette Jurasek Mr. Michael Miller Mr. and Mrs. Mark Breen Engineering Design Services, Inc. Mr. and Mrs. Hilel Kagan Shandra Milroy PLLC Ms. Nellie Brooks Mr. and Mrs. Ray Evans Ms. Maria Kahn Mr. Alan Milstone Mr. Mark Broude Extreme Force Allstar Company, LLC Mr. Edward Kaier Ms. Mary Lee Miltier Ms. Kerri Bruce Fabiana Transportation Safety Ms. Caroline Kane Patricia & Nicholas Mondi Ms. Julie Brudos Training School, Inc. Ms. Barbara Karas Mr. Robert Moore Ms. Ellen Brundage Ms. Roni Falk George & Louella Karthas Mr. and Mrs. L. Kristopher Moore Dr. and Mrs. Patrick Burkhart Ms. Gina Farinich Mr. Dan Kastner Ms. Lynn Morley Mr. and Mrs. William Burns Ms. Maggie Farnan Ms. Jane Keefer Ms. Virginia Morsman Ms. Kristi Schmitt Burr Mr. and Mrs. Tony Femminella Mr. Michael Keerdoja Mr. and Mrs. Frank Mosunic Mr. and Mrs. Michael Busam Terry Ferguson Mr. Jack Keller Ms. Brooke Motsinger Ms. Elizabeth Butler Ms. Marcia Ferguson Ms. Yvonne Kelly Ms. Beth Mulpas Mr. and Mrs. Richard Butler Mr. Gary Fernet Mr. and Mrs. Thomas Kennedy Mr. and Mrs. Kenneth Munkelt Mr. Jerico Cabaysa Ms. Karen Fikar Ms. Nannette Keogh Hannah & Liam Murphy Mr. and Mrs. Robert Caligan First Church of West Bridgewater Mr. John Kilmer Mr. Richard Murphy Mr. Jimmy Campbell Mr. and Mrs. Charles Friddle Mr. Eric Kim Mr. and Mrs. David Murray Ms. Teresa Campe Ms. Jessica Frost Mrs. Linda Kister Ms. Barbara Murray Ms. Tammy Cancela Mr. and Mrs. Thomas Frost Ms. Carmen Klafter Mr. Timothy Murray Ms. Bonnie Carcary Dr. Constance Fung & Dr. Hawkin Woo Mr. Robert Klase Mr. and Mrs. Ronald Murray Ms. Carole Carroll F.X. Hegerty Elementary 2nd Grade Class Ms. Margot Klima Mr. and Mrs. Robert Myers Mr. George Carroll Ms. Frances Gabaldon Mr. and Mrs. Chad Knepper Mr. and Mrs. Andrew Newman Mr. and Mrs. Allan Carroll Mrs. Linda Galloway Mr. and Mrs. Frederick Kober Mr. and Mrs. Kenneth Nichols Ms. Sarah Carroll Captain Joseph Galluccio Mr. and Mrs. John Kohl, III Mr. and Mrs. Ernest Nightingale Mr. and Mrs. Rodolfo Castillo Ms. Shari Gass Mr. David Konecki Ms. Inna Nikolaeva Mr. and Mrs. Joseph Catanzaro Mr. and Mrs. Reggie Gassman Mr. John Kopchick & Ms. Char Kopchick Mr. and Mrs. Chris Nonato Dr. and Mrs. Daniel Cecconi The Gateway Development Group, Inc. Mr. and Mrs. Peter Kopp, II North Carolina State Registration Mr. and Mrs. Aravinda Chakravarti Signe Gatlin Elizabeth and Howard Koslofsky Northport Physical Therapy Mr. and Mrs. Bryan Ching Stephen Gellis, MD Rev. Kermit Krueger Mr. Daniel Norwood Ms. Hugh Choy Mr. and Mrs. Gary Gelormino Pepper Krugman Mr. Augusto Novaes Church & Dwight Co., Inc. Genentech, Inc. Brian & Vicki Ku Ms. Sharon O`Brien Mr. and Mrs. Michael Ciardella GFX Site Development, Inc. Mr. and Mrs. Paul Kuhns Mr. and Mrs. James O’Brien

8 www.firstskinfoundation.org FY 2016 ANNUAL REPORT Mr. and Mrs. Warren O’Brien, Jr. Mr. and Mrs. Lauren Stephens, II Mr. and Mrs. Michael Duncan Ms. Marcia Clayton-Hollimon Mrs. Kathleen O’Driscoll Mr. William Stern Ms. Kathleen Dwyer Mr. Joe Crouse Ms. Juditha Ohlmacher Mr. & Mrs. Brian Stern Ms. Wendy Ebner The De Leon - Khanna Charitable Fund Ms. Marcia Ohlwiler Ms. Janese Stimmel Mr. Steven Eccher Mr. Richard DeGarmo Mr. and Mrs. George Orso Mr. and Mrs. Gene Straight The Elite OC Young Professionals Society Dell Employee Engagement Fund / Silicon Valley Ms. Nancy Osentoski Mr. and Mrs. Ronen Strassburg Mrs. Carol Estes Community Foundation Mr. and Mrs. Frank Osowski Ms. Dawn Stroup Mr. and Mrs. David Fasanella District Doughnut LLC Ms. Julie Oxford-Sommers Mr. and Mrs. Cyril Suda, Jr. Mr. Qazi Fazal The Fred R. Fernandez - Irma R. Rodriguez Ms. Lavanya Palakshareddy Sun Precautions Mr. and Mrs. Joseph Femminella Foundation Mr. and Mrs. Michael Pannacciulli Mr. and Mrs. Kenneth Sundberg Mr. and Mrs. Lucas Fiore, Jr. Ms. Shari Gilevich & Mr. Manning Welsh Mr. and Mrs. Gary Pasquale Virginia Sybert, MD Ms. Rebecca Frankwicz Mr. and Mrs. Carlos Godby Mr. John Pathakis & Ms. Julie Ziter Mr. Matthew Tanner Dr. Ilona Frieden & Mr. Mark A. Jacobson Google Pedicino Family Mr. Mark Tanner Mr. and Mrs. James Gaffney Mr. and Mrs. Michael Hall Mr. Johan Peenz & Ms. Stephanie Peenz Ms. Maria Tessinari Mr. and Mrs. Peter Gass Mr. Edward Hartman Ms. Nancy Pelton Douglas Thomas, MD Mrs. Linda George The Haunted Game Café Ms. Elizabeth Pennington Tom Jones Plumbing & Heating Glacier Tek Inc. Mr. and Mrs. John Havrilla Ms. Linda Perilstein & Mr. Joel Appelbaum Mr. Ron Traber Goshen Center School Ms. Jill Hirschfeld Petro Real Estate Development Corp. Mr. and Mrs. Kevin Treacy Ms. Veronique Hager Mr. and Mrs. David Hoon Mr. and Mrs. Nicholas Pettry Tri Mar Industries, Inc. Jennifer Hand, MD Mr. William Horton, Jr. Pharmaceutical Specialties, Inc. Ms. Shelley Trojanowski A. Howland Hartley, MD Mr. and Mrs. Joseph Hugenberg, Jr. Ms. Virginia Pickles Mr. Phillip Tumbarello Ms. Judith Hartmann Ms. Kendall Jackson Mr. and Mrs. John Pinto Kei Wei Tung Mr. and Mrs. David Hoerle Johnson & Johnson Consumer Inc. Mr. Bob Poe United Health Group Mr. and Mrs. Yung Huang Mrs. Meera Kamdar Mr. and Mrs. Robert Ponzo United Northern Mortgage Bankers, LTD Ms. Katherine Huggins Mr. and Mrs. Richard Kass Mr. and Mrs. Marlon Poole Ms. Theresa Vaughan Ms. Laura Jacobs Mr. and Mrs. Mark Klafter Mr. and Mrs. Anthony Poselenzny Ms. Fulvia Veronese & Mr. Marino DeMarzo Ms. Trish Jeffrey Mr. and Mrs. Eric Kleintop Mr. Jason Poulton Reverend and Mrs. Franklin Vilas Ms. Dana Johnson Ms. Sue Lynn Koo Ms. Nancy Power Mr. and Mrs. Juan Villamarin Johnsonburg Rotary Club Dr. and Mrs. Moise Levy Mr. and Mrs. Alan Pozin Ms. Lisa Vincent Kao Brands Kyle and DeAnn Look Ms. Priscilla Alta Pratt Mr. and Mrs. Phillip Vitali Ms. Marsha Kent Ms. Nancy Mantel Mr. Alan Prince Mr. and Mrs. Thomas Voll Dr. Samira Kirmiz Marriott International, Inc. Progressive Casualty Insurance Co. Mr. and Mrs. Charles Wagner Mr. Charles Kohlbecker & Ms. Lynna K. Search Mr. and Mrs. David McMasters Prost Brewing Mr. and Mrs. John Waldrop, III Mr. George Kollias Ms. Margaret McTernan Ms. Suzanne Ragg Mrs. Katelin Walker Mr. Harry Lancaster & Ms. Jane G. Henderson Mr. and Mrs. Jenry Morsman Ms. Ella Rajnys Mr. and Mrs. Jimmy Wall Dr. Leslie Lawley & Mr. Thomas J. Lawley, Jr. Norwex / Layne Vaughn Rectangle Ware-Ever Pay LLC Wallaroo Hat Company Mr. Thomas Lyons Mr. Frank Osowski Mr. Jeremy Reed Walt’s LLC Mr. and Mrs. Rick Malatesta Mr. and Mrs. Robert Parent Mr. and Mrs. James Register Mr. Michael Wasieleski & Ms. Gladys McCarter Mrs. Margaret Manning Mr. and Mrs. Richard Pedtke Mr. and Mrs. Jon Reid Ms. Judith Watts Mr. and Mrs. John McCoy Charitable Foundation Retriever Enterprises, LLC Ms. Stephanie Wedel Mr. Michael Menefee Mr. and Mrs. Stephen Perrone Mr. and Mrs. Jared Reynolds Mr. Joel Weingarten Mr. David Metzker PG&E Corporation Foundation Ms. Haley Rice Mr. Richard Welter Mr. Shawn Mitchell Pitney Bowes Ms. Marilyn Ridenour Wes Mac PTO, Inc. Chris Mourgelas Mr. Charlie Poole Dr. Mary Ridge Mr. and Mrs. Bill Westlake Hartley Obrien Ms. Amy Powers Mr. and Mrs. Mark Rieger Mr. and Mrs. Richard Wiese Ms. Isabelle Olivos-Glander Mr. and Mrs. Roger Pretak Ms. Kirsten Rising Wilcox Sportsmen’s Club Mr. and Mrs. Allen Overway PSEG Power of Giving Campaign Mr. and Mrs. Joseph Roberts Mr. and Mrs. Paul Williams Ms. Patricia Patock Mr. and Mrs. David Purcell Mr. and Mrs. Kyle Robinson Mr. and Mrs. Peter Williams Mrs. Patricia Pfeiffer Mr. and Mrs. Victor Rice Rocco’s Auto Service Ms. Ann Winters Mr. and Mrs. Peter Philips Ms. Paula Rivers & Mr. Steven R. McConnell Mr. Derek Roesener Ms. Elizabeth Wirstrom Mr. and Mrs. Ron Phillips Molly & Charlie Roraback Mr. and Mrs. Michael Rogers Ms. Deb Witmer Polar Products, Inc. Mr. and Mrs. Charles Schaffer Mr. and Mrs. Mark Rogers Mr. David Wohlfarth Ms. Bailey Pretak Mr. John Schoendorf Mr. Joshua Rome Ms. Teri Lynn Wolford Ms. Marguerite Pullen Mr. Stephen Schweighoffer Ms. Michelle Roubal Mr. Wesley Wright Mr. and Mrs. Jeff Ricci Mr. Eric Schweighoffer Rushton & Company Mr. David Wright Ms. Michelle Rose Drs. Pedro and Lucy See Mr. and Mrs. H. Duane Ryan Ms. Nancy Wu Mr. and Mrs. Angelo Sampona Jennifer and Rachel See Safety 1st Security, Inc. Mr. and Mrs. E. Charles Wunz Mr. Stuart Sanders Mr. and Mrs. Bhugwant Sethi San Diego Sailing Tours Yalla Mediterranean Mr. and Mrs. Donald Savoy Greg and Vicki Shea Mr. and Mrs. Gordon Sanders Albert Yan, MD Mr. and Mrs. David Schell Mrs. Janet Showers-Patterson & Dr. and Mrs. H. G. Sawyer Mr. Ronn Ybarra Mr. Steve Schell Mr. Day Lewis Patterson Mr. and Mrs. David Saxon Ms. Joanna Yedreyeski Dr. Scott Schindell Siemens Caring Hand Foundation Mr. and Mrs. Mark Saylor Mr. and Mrs. Mike Young Mr. Thomas Shaer & Lisa Shelnitz Mr. Samuel Simmons Mr. and Mrs. Shawn Saylor Mr. and Mrs. Brian Zavitz Mr. and Mrs. Daniel Siegel Mr. and Mrs. David Stevenson Scarlet Ladies of the Tri Cities Mr. and Mrs. Edward Zawacki Mr. and Mrs. Robert Simmons Mr. and Mrs. Daniel Valdivia Mr. and Mrs. Charles Scheidt Mr. Eric Zugerman Rama Shankar Singh, PhD Vestal Central Schools Mrs. Arden Schlegel Zwei Brewing Dr. and Mrs. Michael Sisack Ms. Mary Anne Wegmet Mrs. Norma Scholl Mr. and Mrs. Dennis Sopher Mr. and Mrs. Evan Westlake Francine and John Schranck $250 - $499 South Troy Timing Association Ms. Jean Witter Mrs. Ada Laverne Schwartz Ms. Katie Adam Mr. David Spencer Mr. and Mrs. Thomas Wornom Dr. and Mrs. Joseph Scirica Rex Amonette, MD & Johnnie Dacus Amonette Mr. and Mrs. Larry Spruill Mr. and Mrs. Michael Scirica Dr. and Mrs. Christopher Anadale Mr. and Mrs. Harry Sundik $1,000 - $4,999 Mr. Armando Sciullo Mr. David Anderson Titan Concrete Inc. Agilent Technologies, Inc. Ms. Rosanna Sforza Okey Anderson Mr. and Mrs. Mike Tobey Alcon Labs Cathy Callaway Ms. Maryam Shahi Mr. Colin Angle Mr. and Mrs. Andrew Trees American Society of Foot and Ms. Patricia Shiffner Anonymous Mr. and Mrs. Sam Unruh, Jr. Ankle Dermatology, Inc. Mr. and Mrs. Elliot Shulman Asti Excavating Mr. and Mrs. Dietmar Urbat Anonymous (3) Ms. Catherine Siders Mr. Robert Baldi Mr. and Mrs. Richard Weinert Sherri Bale, PhD Mr. Jonah Siegellak Mr. Todd Bartlett Mr. and Mrs. Brian Wetzel BE Bronx Builders, LLC Mr. Len Sierra Mrs. Heather Bauman Mr. and Mrs. Bud Wheeler Ms. Gioia Bianchi-Williams Mr. Jeffrey Simon Mr. Kenneth Beck Mr. Christopher Williams Mr. Ryan Bibler Dr. Maura Simpson Mrs. Ann Benedetto Mr. and Mrs. Sammy Williams Billabong-USA Ms. Margaret Sinclair Ms. Renee Bizzell Mr. and Mrs. George Zailer Ms. Martina Cheung Mr. and Mrs. John Sipe, Jr. Heather Brandling-Bennett, MD Chevron Humankind Chevron Corporation Mr. Jesse Sipper Dr. and Mrs. David Bryson $500 - $999 Keith Choate, MD/PhD Mr. and Mrs. Matthew Sleeper Canzone Contracting 58-74 Grand Avenue Tire Corp. Mr. Sean Connelly Ms. Cynthia Smith & Mr. Gregory M. Petrick Mrs. Donna Clare AmazonSmile Mrs. Marie Cox Ms. Laura Smith Costco Wholesale Corporation Anonymous Mr. and Mrs. David Denman Mr. Steven Sobkowski Ms. Mary Cottingham Mr. John Armstrong Dermal Therapy Research, Inc. Ms. Ethel Sorgatz Brittany Craiglow, MD Mr. Patricio Benavente & Ms. Cecilia Nieto Deutsche Bank Americas Foundation Mrs. Caroline Spayde Mr. and Mrs. Alan Crouse Mr. and Mrs. Marc Benedetto Dr. and Mrs. James Draper St. Mark’s United Methodist Church Mrs. Lauren Cunningham Mrs. Isabell Blanton Mr. and Mrs. Bob Dubanski Mr. and Mrs. Peter Stano Ms. Hayley Davis Mr. and Mrs. Lewis Brinkley Mr. and Mrs. Mark Evans Star Struck Dance Studio, Inc. Mr. and Mrs. James Dawson John Browning, MD Fallene, LTD State Auto Insurance Companies Mr. and Mrs. John Deering Dr. Anna Bruckner Dr. and Mrs. Phil Fleckman Mr. and Mrs. Larry Staton Mr. Stark Draper Cal Safe Ms. Bobbi Florian Ms. Gayle Steele Mrs. Marianne Dugoni Mr. and Mrs. Rodney Chapin Foundation Source

www.firstskinfoundation.org 9 The Gaffney Foundation GE Foundation Ms. Trilby Glover Gold Associates Meet members Rog, Tina Mr. James Griffin, Jr. Mr. and Mrs. David Heyson Mr. and Mrs. Scott Hollenbeck Ms. Judith Jauch Mr. and Mrs. John Jessiman and Mui Thomas Mr. and Mrs. Wolfgang Knabe Mr. and Mrs. Paul Licursi images of Hong Kong: the hustle and McGraw Hill Financial PAC bustle and towering glass skyscrapers Charity Match Program Mr. and Mrs. Lawrence McTernan of downtown Central; the “girlie” bars Mr. and Mrs. Robert Melton Drs. Leonard & Ellen Milstone of Wan Chai made famous by Richard Mr. & Mrs. Todd Mooney Mr. Joseph Morsman, III Mason’s The World of Suzie Wong; and NeoStrata Company Ms. Edie Nordlund & Mr. Bob Nordlund the madding crowds of densely populated Mr. David Norris Northeast Securities, Inc. Mong Kok. Onevoice P2T Network of NYC, LLC Amy Paller, MD & Etahn M. Cohen Mr. Todd Parisi (Excerpt below is an adaptation from Mr. and Mrs. Thomas Petelin Mr. and Mrs. Brent Pfeiffer The Girl Behind the Face by Rog Mr. and Mrs. James Phillips Thomas) Laura and Chris Phillips Ms. Esther Pinto Mr. and Mrs. Michael Potack SAI KUNG is also where my wife Tina and Mr. and Mrs. Joseph Proscia Queens Ballpark Company L.L.C. I raised our daughter, Mui. We became Remember to Breathe Studio Gabriele Richard, MD Mui’s parents quite by chance. William Rizzo, MD S&P Global Corporate Responsibility Mr. Bryan Schell It was summer and Tina suggested we Mr. and Mrs. Aaron Scholl volunteer for a couple of weeks with Mr. and Mrs. Vincent Sellecchia Ms. Nomi Silverman young children. It sounded fun. We Mr. and Mrs. Lawrence Silverman Dr. and Mrs. Robert Silverman were introduced to Mui, an abandoned Ms. Tejal Snyder-Kamdar We are delighted to introduce Rog, SR Lotion one-and-a-half year old Hong Kong Summers Laboratories Tina and Mui Thomas, an extraordinary Chinese girl with a rare deforming and Sunday Afternoons family from Hong Kong who are Mr. and Mrs. Ronald Swenson life threatening skin disorder called The Theraplex Company, LLC challenging attitudes, raising awareness, Ms. Janie Thompson harlequin ichthyosis. We looked forward Ms. Catherine Tiemeyer and inspiring women and men the world Mr. and Mrs. John Tierney to having Mui visit us in Sai Kung. Toby United Methodist Church over. Their book, The Girl Behind the Face, Toyota Motor Sales, USA Utay Family Foundation written by Rog from Tina’s perspective, is a But each time we visited Mui in the hospital Mary Williams, MD & Peter Elias, MD Mr. and Mrs. Andy Wohlgang story of how three people became a family, where she lived, she screamed and turned Ms. Denise Yong the obstacles they overcame and the away, and ripped off her skin and tore $5.000 - $9,999 Anonymous choices that had to be made along the way. out clumps of hair until she was a bloody Bio-Reference Laboratories, Inc. Dr. & Mrs. John Compton It champions Mui’s resilience and strength mess. For Tina, winning Mui’s trust Illumina, Inc. while living with harlequin ichthyosis, all Mrs. Karen LaBarbera quickly became a stubborn battle of wills. Tang Family Fund while empowering others along the way. And each time Mui would finally calm Dr. Eugene Van Scott Mrs. Margaret Vernet In the words of Tina Thomas, “It is what down, she was inseparable from Tina, like Dr. and Mrs. Ruey Yu Dr. and Mrs. Eric Phelps love is.” a baby kangaroo in her mother’s pouch. GeneDx Inc. MicrodermaMitt, Inc. (Paragraph below is an excerpt from The It wasn’t until the beginning of the

$10,000 - $99,999 Girl Behind the Face by Rog Thomas) following year that this battle was won Ace in the Hole Foundation, Inc. and Mui finally came to visit. Allergan Foundation Sai Kung in the eastern New Territories of Mr. and Mrs. Michael Briggs Galderma International S.A.S. Hong Kong is a surprise, a breath of fresh Twenty years ago, caring for a child who Mr. Jeffrey Hoerle & Ms. Allison Draper Mr. and Mrs. Robert Hoerle air, a relaxation, a break, a quality of life; looked as different as Mui did in Hong The Ambrose Monell Foundation Patagonia Pharmaceuticals, LLC Sai Kung is coffeehouses, bars, little Kong was a constant challenge: people in Dr. and Mrs. David Scholl Select Equity Group Foundation bakeries, eclectic eateries, seafood wheelchairs were stared at. Taking Mui $100,000 + restaurants and al fresco dining; and outside meant walking the gauntlet of Lennox Foundation beyond the town itself, Sai Kung is rugged staring and occasional cruelty: sometimes beauty: rolling hills, uninhabited islands people shouting insults at us, sometimes and white sand beaches; wild monkeys, people screaming at Mui. Once, someone barking deer and feral pigs, and cows that spat in Tina’s face. wander through the streets. Sai Kung is a world away from the picture postcard

10 www.firstskinfoundation.org But Sai Kung has always had a strong sense of community on and smiled at them, said hello, made eye contact and – although connecting with the warmth and kindness of the sometimes held their stare, or chose not to see them. local Chinese population meant making a bit of an effort. It Treating Mui as an ordinary child seemed to put the people began with our first ever walk through Sai Kung. we bumped into in Sai Kung at ease. As she has grown up, In the market curious Chinese women, men and children folks in Sai Kung have tended to embrace her and regard her clustered round us. Tina smiled and said jo san – good as a sweet and confident girl. morning – to the different faces in the crowd and told Mui to How we came to adopt this courageous little girl, how our say hello, too. An old lady pushed forward and demanded to daughter grew up to inspire ordinary men and women across know what had happened to Mui. Tina told her it was a skin Hong Kong, how she won over a British prime minister, disorder and added, Mui’s Heung Gong yan – a Hong Kong billionaires and royalty with her dynamism and spirit, and how person. The woman smiled and gave Mui sweets. Tina told cyber bullies drove her to the brink of suicide – that is our Mui to say thank you and give the woman a hug, and with a Hong Kong story. We’ve shared it in a book: The Girl Behind hefty nudge of encouragement from Tina, Mui hugged the the Face and we have now signed with a US literary agent woman, who smiled, and the cluster of people was soon in Dallas, Texas. Our aim is to challenge attitudes, empower smiling, too. others and raise awareness of commitment, cyberbullying When we left the market Tina told Mui to wave and blow a fei and visible differences. man – a ‘flying kiss’ – and everyone smiled and waved and (This article was first published in: the Cathay Pacific blew kisses back. Airways inflight magazine.) Find out more about their book, In the street, some people stopped stiffly, some stared silent- The Girl Behind the Face, and their motivational speaking ly, some screwed up their faces. Some people recoiled or engagements. jerked their heads back like they’d been scalded. We walked http://thegirlbehindtheface.weebly.com Why I Fundraise for FIRST By Kimberly Cole, Member of FIRST Board of Directors Assistant Editor Ichthyosis Focus Recently we sat down with one of our loyal and enthusiastic supporters, Kimberly Cole, to find out what compels her to continually support and fundraise for FIRST, and how she might encourage others to do the same. Here’s what she had to say: “We recognized the value of everything we were receiving from FIRST and felt a duty to give back so families that came after us could benefit from the same support. While I know every dollar counts, we couldn’t afford to contribute at a level we felt was adequate. (A new baby is expensive, and one with a medical condition can be really expensive!) A fundraiser let us draw on the support of our friends and family – so many of whom were eager for a meaningful way to support us – to collectively raise a larger donation amount. My favorite fundraisers have been in partnership with friends who work in direct sales and donated their profits from a certain period. I am so thankful for their generosity! I hosted a “party” at my house for product demos and shopping -- and to share information about ichthyosis and FIRST -- and was also able to share information online for family and friends that live away. Everyone enjoyed shopping for jewelry, beauty products or cleaning sup- plies – in many cases, they were items they were buying anyway, now with the benefit of supporting a good cause. My advice is to make it personal, don’t be afraid and say thanks. Before asking people for money, I had to get comfortable with sharing our story. I am typically a very private person and, as a result, a lot of people around me didn’t realize how extensively ichthyosis affects our family, or how much FIRST has supported us. Opening up about this wasn’t always easy, but I was so overwhelmed by the response I received. We are truly grateful for every donation we’ve brought in – whether $5 or $500 – and I always make an effort to let donors know how much we appreciate them.” - Kimberly Cole

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